However, as part of some work on the quality and productivity indicators on ambulatory care sensitive conditions we started to observe a theme over two years of young people with type one diabetes, using A&E as their main access to clinical care. We found that young people were not attending clinical appointments in primary or secondary care, then being admitted through A&E with DKA. Whilst small in number (9 out of 15,200), this group of patients was overrepresented in attendance and admissions though A&E.
On investigation we found that whilst paediatric diabetic services in Gateshead are responsive (9.52% patient satisfaction) and there is significant work underway to transform adult services; transition services remained challenging and unresponsive to patient need. Access to self care, psychological support and emotional wellbeing posing particular challenges. We learned a great deal about our approach to patients and why they did not engage with us when we tried to engage with them as outlined below:
A search was undertaken to identify the patients, aged 16 to 25. They were initially contacted by letter and asked to contact the practice nurse. There was no interest from this initial contact. The same patients then had a less formal card sent, offering them £5 to cover expenses if they chose to meet with the practice nurse at a venue convenient. There was no response from patients.
At this point the diabetic specialist nurses were also contacted and asked to inform the practice if there were any admissions from this group of patients. With limited response, the patient list size was extended to include Rawling Road Surgery and age group was extended from 13 to 40. One patient responded and the practice nurse developed a care plan and started to case manage this patient intensively.
Investors in children were engaged (a charity with experience of working with young people with diabetes). An event was planned jointly with secondary care to consider the transition needs of young people with diabetes. At this point we were able to engage with a small number of this target group.
This initial scoping work identified that there is no community based self-help mechanism for young people in Gateshead who have type one diabetes. Transition services are fragmented and discussion with young people indicated that rather than primary care they would prefer continuity with clinical teams who had existing good relationships with them.
Some of the quotes from people were captured:
“We would prefer to meet to go bowling and do other activities rather than sit in a group and talk”
“ we want the nurses who have been looking after us in childhood to continue caring for us- they know us well”
“it very important that appointments with professionals are very flexible and suited our needs”
“More support should be offered to parents about our condition as many are very anxious”
“Information leaflets and reading material displayed outside clinics should be more informative and up to date and clearer guidelines should be available to us diabetics about alcohol and sexual health”
“Teachers should have a better understanding of our condition and know what to do in an emergency e.g Hypo’s (teachers were better equipped in primary school than in Secondary school or college)”
“Use of technology e.g insulin pumps and continuous glucose monitoring should be made more available to young people”
“We like texting to communicate with our nurses”
We were able to then involve young people to work with us to develop a bid for funding and secured £42,000 to extend self-help groups from Durham to Gateshead and Newcastle. A young person with diabetes has been appointed to project manage this work through a child centred 3rd sector organisation to set up their group and develop a programme of activities. In addition, they are working with us to develop a self-help tool using Florence. A closed facebook group is their main mechanism for communication and support, with a separate one for parents.
T1KDZ a support group for children with type 1Diabetes, was extended with this funding to cover the North East of England. It is run by children and young people and facilitated by investing in children. The project team including young people meet at OTMG-RR on a monthly basis and their work is being used to inform both current provision and commissioning of future services. More information can be found on www.t1kz.weebly.com
The Gateshead self-help group was launched on 23rd September 2014. Sixty people attend the first session!!. As this network grows, sustainability has been facilitated though local fundraising with support from the practice.